Imagine you've been diagnosed with an incurable genetic disease and you are told you will not only lose your ability to walk and move your arms, but you will die between now and the next 18 months. What would you do?
My name is Avery Lynn Canahuati, I'm almost 5 months old, and this has become my reality. But before I die, there's a few things I'd like to accomplish...this is my bucket list and my story.
SHARE IT & HELP ME TELL THE WORLD ABOUT SMA!

Tuesday, May 1, 2012

Avery Lynn Canahuati 11/11/11 - 04/30/12

Hello everyone this is Avery's father. Avery passed away yesterday sometime around 3pm due to pulmonary complications related to SMA. In short, one of her lungs collapsed and she went into cardiac arrest. I immediately performed CPR on her and was able to bring her back to life, but only for a brief period of time before she passed away shortly after arriving at the hospital. Avery's passing this quickly came as a complete shock to all of us, as she had just been given a thumbs up at her last doctors appointment only three days ago.While we were aware of the severity of her diagnosis, we never lost hope for Avery and even in her passing, we still have hope for our daughter and all of her friends. I'm going to share a note Avery gave me back when all of this started, but made me promise not to open until I knew the time was right...Dear Mommy & Daddy:If you're reading this it's because I've gone to take care of my Uncle Bryant, Nana Carolyn, Papa George, and all my great Grandparents. I love you veeeeeeeeeery much. Also, tell Nana & G-Pa I love them too. In fact, tell everyone who loved me that I love them and I appreciate them caring about me.When I started writing my blog, I thought I'd only be speaking to my closest friends and family members. Little did I know soooooooo many people would care about me and while I'm flattered to have so many people who love me, I hope they will also take time to love and care about all of my friends out there with SMA.You see, I'd never heard of SMA prior to being diagnosed with it, yet there's thousands of my friends out there living with it today and millions of my future friends parents who are unknowingly carriers of the SMA gene. Without awareness and without a cure, I'm afraid more of my friends are at risk to have their lives drastically shortened by SMA.When people think of me, I hope they'll also think of all my friends who have been through this and who are going through this now. But what I really hope for is that when people think about me, they will not waste time sitting there feeling sorry for me, rather I hope they will STAND UP in honor of me and all of my friends (past, present, and future). And they can do so by spreading awareness and helping to fund a cure for my friends.To all my SMAns, you followed me, now please follow all of my friends. Mommy. Daddy. I love you every bit as much as you love me. And while I'm not here physically, I will forever live in your minds, as you will mine.

Love always,

Avery, Aviator, Aves, ScuttlebuttAlso, before Avery passed away, I made her a promise that I would continue to be an activist in raising SMA awareness, making genetic testing universally available, and in finding a cure for her friends. I will not break that promise and in the name of SMA awareness and funding a cure, I hope parents of children everywhere will look at Avery's Bucket List and help her complete items she was unable to. And when you do, take pictures and send them to Avery's Bucket List so we can show the world and continue to share Avery's message.

One of Avery's newest Bucket List goals was to help raise the remaining $365,000 (out of $1mil) needed to bring Dr. Kaspar's SMA Gene Therapy program out of the lab and into her SMA friends. Dr. Kaspar's SMA Gene Therapy could cure Avery's friends or at the very least offer advancements towards a cure for them.

Once that goal has been achieved, Avery asks that all monetary donations at this time be made in her name to Fight SMA(www.fightsma.org).

Here's the last picture we ever took of Avery. It was taken approximately 15-20 minutes before her lung collapsed and she went into cardiac arrest. She was sitting on her mommy's lap looking at me and all it took to get her to smile this big was for me to keep saying "Hi".

SMA, you did not take my smile away!

THANK YOU TO EVERYONE FOR LOVING AVERY, SUPPORTING US, AND HOPEFULLY FOR CONTINUING TO SUPPORT AVERY'S FRIENDS WHO ARE STILL OUT THERE!!!

Items I Can Scratch Off My Bucket List:

1. Not let SMA take my smile away

2. Take one last breath, then take one more before I go to live with my Uncle Bryant, Nana Carolyn, Papa George, and all my great Grandparents (Tommy, Laura, Jim, Walter, Julia, Joseph, and Audine).

Up Next:...I found a few archived blogs that Avery never posted...give me some time and I will share them as well as many stories of other children with SMA (past & present).

Don't forget to share my story by following & forwarding my blog, following me on Twitter (AveryBucketList) and Like Me on Facebook (Averys Bucket List)! While it may or may not help me in my lifetime, the more people who are aware of SMA, the less likely future children will be born with SMA, and the more likely there will one day be a cure for children who already have SMA!

2,049 comments:

I am so incredibly sorry for your loss. I will pray for you and your family. I had just recently found your blog through yahoo and her story touched my heart as did your families strength to make the most out of her life. My heart breaks for you all. ♥♥♥ Prayers and love.

I just found this blog from a local news site and had been reading up on this little angel's life when I saw this last post. I am truly sorry for your loss and no words can ever take away the pain of losing your child. I hope you and your wife will be able to keep Avery's spirit alive and bring more awareness to SMA. Hoping you find peace and comfort knowing she is completely healthy and happier now.

I never, ever comment on blogs of people that I don't know as a general rule. I've been following Avery since her second post, and I just want you to know that my heart and prayers are with you. You are and continue to be an amazing family and an inspiration. All the best to you.

I am so so sorry to hear about this. It's been news I've been dreading to hear since I started following your blog. I just want you to know how much reading about your family has affected me, Avery made a huge impact in her short life, and was such an inspiration to everyone who met or read about her. I will keep her spirit in my heart for the rest of my life.

Avery, you blessed your mom and dad's lives with unconditional love and also touched the lives of a lot of people you didn't know and who didn't know you. I am sure mommy and daddy will miss you terribly but I know they relished every single moment with you. You are now their guardian angel, take good care of them. As for us here we will keep spreading the word about SMA.

I'm so sorry for your loss. I can't imagine how hard this is for you! I will be praying for all of you guys. I have been keeping up with Avery's blog lately and I have been praying for her and all of you. Maybe you will find a bit of comfort knowing she is dancing with Jesus right now looking down on you guys! Thank you for what you have done. You have made an impact on everyone!! Her story is inspirational and your strength through all this is uplifting. You both keep strong! praying for you guys.

So sorry for your loss....I just started reading Avery's Blog and it took my breath away. I loved seeing how you guys let her live her life and do things on her bucket list. I have been following her bucket list on here and on twitter! I had never heard of SMA until finding the article on Yahoo. I hope soon doctors can find some sort of cure for SMA. Praying for you guys!!!!

This breaks my heart, I cannot imagine what it is doing to your family. My deepest condolences to you all. I only found out about Avery last week and I don't even know her but I am crying anyways. It is small comfort but you should be congratulated for shining light on this condition and hopefully other parents will not have to endure what you have had to go through.

Avery thank you for sharing your story. You and your parents have made a difference and will continue to help bring awareness to SMA. I love that you never lost your smile! My thoughts and prayers are with your family in their time of need.

I don't know you, I never met Avery, but my heart was touched by her story. This morning I am sad and my eyes fill with tears with her passing. Thank you for sharing her story and thank you for sharing your love with all of us. Your family is in my prayers as you need the strength to carry on! My God continue to bless your family!

I can't even come up with the words. You are all so amazing and have touched so many people. Keep up the fight! I think we were all looking forward to watching all the bucket list items happen, but you are all on a different journey now. My thoughts are with all of you!

I was just introduced to SMA and Avery's Bucket list yesterday. I am so sorry for your loss. I have spread the news to my friends who are pregnant and suggested they get the testing needed to detect this disorder. Thank you for sharing your daughter and your story with us. She was a precious sweet girl and I hope you are wrapped in the love of God and your community.

There are no words for what you are going through. Avery was lucky to have such wonderful family and parents. My heart breaks for you in this time. All I can say is Im sorry and you have many prayers coming from Tennessee.

I am so very sorry to read that Avery has left your side, but so happy for her that she is with Him, and will never know any sadness or pain. May she show you signs each and everyday that she is okay and that she surrounds you and her Mommy with love and light. Prayers for your family.

I am so sorry for your loss. I only starting following Avery's story two days ago and read almost every post. You two are certainly some of the strongest people I know, and yet have never met. From you posts, I can tell she was truly loved and gave love back to you and everyone around her.

I am so sorry for your loss. I have been quietly following your blog since just after it started. I have a little one who is also medically fragile and fights for his life. You have helped me remember that its the little moments, the smiles and the "normal" activities that need to be celebrated as much as the big ones. Fly high, little princess. You are loved beyond words. Your short life has impacted so many, many others.

Wow. Wow. Wow. My heart and head are reeling for you. Please know that you will be a constant in our family's prayers. You are still such strong and mighty warriors for your little girl -- even in her memory. I cannot imagine your pain, but I know that God can. Our deepest sympathies to you!

I am heartbroken to read this...and shocked. I will be praying for you guys as you walk through the coming months. My baby met Jesus in October after 67 days in the hospital, and I have a friend whose baby has SMS. The loss of a child is unlike anything else...yet God is faithful and wise...and He alone can bring so much good from such tragedy. Thank you for sharing your story. Thank you for letting us all know Avery a little. What a blessing she is!

R.I.P. Little one... And to Mr. and Mrs. Canahuati, bless you. I just started following your daughter's story yesterday and read a lot of your blogs. You all lead a fulfilling life for Avery. Again Bless you all, and if I decide to have another baby, I will definetely request an SMA screening.

May she rest in peace. What an amazing little girl! I pray you find comfort in knowing she is in heaven surrounded by so many people who will take excellent care of her until you are reunited. Your story has been inspiring. You are truly incredible parents who took an uncontrollable situation and made the best of it. She was a lucky girl. Bless you and so many prayers for your family.

Our thoughts and prayers are with you at this most difficult time. Even in a long life some people never make an impact on this world. The impact Avery made on this world in such a short time is amazing. She was a beautiful litt angel here on earth and will continue to help children now and in the further. Thank you for sharing your little miracle with us all.

Michael Words can not express the sorrow and pain I feel for the loss of your child, You Have My Deepest Sympathy.Just remember she will be waiting for yall.No more pain,no more tears.Just big big smiles now...

You Sweet little ANGEl, I didn't even know you until 2 days ago and I am a mess, I can't stop crying not for your leaving, but you touch my heart so deeply I can't breathe. I promise! just like your mommy and daddy to continue to support and bring awarness to a diease I knew nothing about until I met you! You've become my angel in heaven, I'll look to you and GOD for peace and awareness and love forever! ♥

Dear Avery,Mike, and Laura...I cannot tell you how much my heart aches for you and your family. You faced Avery's illness with bravery, heart and the most uplifting spirits I've ever known. Thank you for raising my awareness of SMA and showing me (and everyone else) that you can make a difference, even with such a very short life, Avery made a huge difference. May God bless you and your with peace and understanding during this difficult time.Consolations and condolences,A SMAn and Avery lover.

What a touching story... I just found your blog today (through an acquaintance on Facebook). I'm so sorry for your loss. Through reading this blog this morning, you have given your little angel so much joy, happiness and experiences! What AMAZING parents Avery has. My thoughts and prayers are with you during this time of grieving and celebrating Avery's life. ♥

My heart aches for you. I just began reading Avery's blog yesterday. What a beautiful, courageous little girl. I hope that you find comfort knowing she is in God's arms now. Peace to you and your family.

I am so terribly sorry for your loss. My daughter, Caitrin, was born still on 11/11/11, so I know she's up there welcoming Avery so she can have a playmate her age in Heaven. I'll be praying for your family that you may have peace and strength. I know Avery will be proud of your courage as you fight to raise awareness for SMA.

I am one of Avery's followers and this causes so much pain and tears in my eyes. Avery has been awarded her angel wings by God, and in heaven she will be healed. Avery will feel no more pain and no more sickness.

Oh Avery, I am so sad at your passing but still rejoicing for the fantastic life you had with you family and all the new friends you made (including me). You and your family have so inspired me. I thank you for that.

I am so very glad I got to meet you - even if it was only over the internet. You and your family have been in my prayers and will continue to be. I hope one day they do find the cure for SMA. I do thank you for bringing awareness to me and many other people about SMA.

For Avery's family, you all have my heartfelt condolances. I wish I had found Avery sooner, but I am so glad I did find her. Please take care.

I am so sorry for your loss. I was at church on Friday night and my preacher had special prayer for anyone who wanted healing in their physical body. I asked for special prayer for Avery. I have been reading this blog every day and she has been such an inspiration to me. I cry every time I read a new story because I am so amazed at everything she has accomplished in only 5 months. You are very strong parents to an extremely amazing girl and I hope that you find peace knowing she is not a prisoner of SMA and has been a huge encouragement for millions.

I am so sorry to hear of this you guys!!! We send our prayers and hugs to you! This is a path that no parent should walk! Thank you for all you are doing to help raise awareness for SMA--you indeed have reached millions and that is what is important. Please know you are close in prayers. So very sorry :(Sarah Turnbull, mommy to Stella (Type I SMA)caringbridge.org/visit/stellaturnbullturnbull

God Bless you Avery. You are an inspiration. I was so looking forward to seeing you on the Ellen show, I really was! I hope Ellen can still find an opportunity to bring your parents to the show so they can spread even more awareness about this disease. You are a little angel Avery. You will be much missed. We love you!

My heart aches for you ... I am so sorry for your loss. I so admire your courage, and your commitment to bring awareness to SMA is greatly appreciated by other SMA parents like myself. I have a feeling that millions of unborn SMA kids will benefit from your story and dedication to help all the great researchers out there find a cure. I am on your team, that is for sure. Stay strong, we need you and your astonishing humor and strength in an impossible circumstance. Wishing you peace in your grief.

Oh sweet Avery, this post came as a shock to me as I'm sure your passing did for all who loved you. Because of you I now know about SMA and will continue to spread the word. I so enjoyed your blog, little one. I am glad I had the chance to "meet" you and learn from you. My prayers are with your family right now.

while I can't imagine what you are going through today, I do want to say that I am so sorry for your loss. You two are the best parents and are so lucky to have had the time you had with precious Avery ! She has literally touched millions of hearts and that is just amazing ! I pray that God gives you strength to make it through the next few days... Always remember the amazing life you gave her in such a short time, and that killer smile she had ! Hugs to ya'll

Dear avery, This is McKennon. Im so sorry i never got to meet you and take you on your first date but we will meet one day. You got your little wings now so fly to all those who love you in heaven. Your family has done so much for you and the fight against SMA.

Avery and your family has touched my heart in such a huge way. As a pediatric nurse and mother of three, my heartaches for you. AVERY had made such a difference in her 5 months of life, more then most in their lifetime. Thank you so much for sharing her smile. Her life will not be in vain. I will kiss my babies everyday, because she taught us how precious life can be. Little Avery fly free, little brave girl with a beautiful smile:) God bless you and may God wrap his arms around you all.

My heart goes out to your family, thank you so much for sharing Avery's story, the first thing I did this morning was email Ellen, I wish we all could have helped Avery reach her number 1 bucket list item. Although I have never met Avery I know that I will miss seeing her pictures and reading about her daily. Your family is in my thoughts and prayers, I will continue to tell everyone I know about SMA and pray for a cure. May God wrap his arms around your family in your time of need and know that you have one more angel watching out fo you.

I am so sorry to hear about Avery's passing. I just "met" Avery a couple of days ago. Her story touched me, as did the way you as her parents sought to bring her as much joy as possible in the time she had. I made a donation... I was not aware of this disorder until Avery. God bless you

Thank you for sharing your story. Before a few days ago when I read your story online I too had never heard of SMA. Now its something I will never forget. My condolences and prayers are with you and your loved ones. You made a huge impact in this world.

I just came across your blog this morning Avery. I wrote in a couple of items for you to add to your bucket list. I actually forgot one and when I came back in to add it, I saw that your dear father posted your passing. Baby girl, I pray that you will never be forgotten by the millions of people whose lives you have touched! I pray that your family will find joy and comfort in the memories that you gave to them in your 'too short' life! I pray that your memory will ignite a movement within us all to 'keep it simple' and enjoy every single second of life!! Love and prayer to your family little one. You will be missed!SaraPEI, Canada

Sweet Avery!!! I am praying for your family, and you have changed so many lives! I will help continue to spread the word about SMA! Your life although it was short, has made a BIG impact on so many people!!! Love you sweet girl!

I'm so very sorry for your loss. But I praise God for the time Avery spent here on earth and the love and smiles she brought you and everyone who knew her. Also, I'm thankful for the awareness of SMA she brought everyone. She was an angel here on earth and now in heaven.

Thank you for sharing your angel with the world. So many of us love her and admire her for her bravery and courage through her fight. Thank you, Avery, for sharing your time with us and your story with us. You are a hero for so many! We love you, Avery. Please keep your mom and dad as strong as you are! Heaven has gained one beautiful, perfect angel today. You were too good for this world. Your memory will forever live on here and your message will remain loud. Rest peacefully little angel and keep smiling!

Sweet Avery... We love you. Though we never knew you personally, your blog has given us a window through which to see you. Thank you, for that. You will never know the number of hearts you have touched, the lives you have changed, or the smiles you have put on others faces. Your smile still is contagious. Your blog brought joy to my days. You touched more people in your short life than others have in years of living. I will stand up for you, and all of your SMA friends. You started this, and it is our job, as your friends, to finish it for you.

Avery has been welcomed into Heaven with open arms. You, as parents are welcomed into an unfortunate "family" of us who walk the earth without our children. You will be reunited in Heaven one day and your pain will feel like a fleeting moment. Praying that God brings you comfort in this storm. Thank you for sharing sweet Avery's story.

I'm so sad you had to go so soon! You ARE a beautiful and amazing little girl who has some REALLY amazing parents. Knowing that you have touched the lives, hearts, and minds of many people should bring much comfort to your family, friends, and loved ones. The fight will go on to help others know about SMA. Your smile, your beautiful smile, will live on forever. God bless you Avery!

I've just found about about little Avery's condition last week through Yahoo! I've been reading your blog about her and what a tremendous life she had with her two precious loving parents. My prayers are with you during this difficult time. Her memory will live on because of what you are doing to raise awareness SMA. May God's strength and grace comfort you and give you peace knowing that Avery is completely healed and in the hands of her heavenly father and her all her loved ones who have been waiting on her in heaven.

Sweet lil Avery--you've touched & changed my life forever. You are now in a place where you will be able to run and jump and play. But send strength to your momma and dad & family because they need it right now. You will be forever missed <3

I believe as parents you did a phenominal job in the short time you had with your daughter. Your memories will last a lifetime. My thoughts and prayers to you and all your family. The world was truely blessed to have had Avery in it.

There are no words to express how much your little girl means to you or to all of the people she has touched through her blog. Today will find many of us grieving for a child we never met. May God wrap his arms around you and may your angel in heaven continue to guide you in this fight.

I am so terribly sorry to hear about precious Avery. I just stumbled on her blog yesterday, and was moved beyond words by her strength and beautiful smile. Please know that Avery and your entire family is my thoughts and prayers. I am sure your beautiful angel is smiling down on you from Heaven.May God bless you and bring you comfort and strength during this very difficult time, and as you continue to fight for Avery and all of her friends.Love always - Viktoriya (St. Louis, MO)

I have been following Avery's story for the past week. I went back and read all of the posts from the very beginning. I was unaware of what SMA was, but have heard about it in the past not realizing the actual name.

Avery, I want to thank you for teaching me more. You are a very special angel and your experience is going to make waves for a long, long time.

Avery's parents, thank you for sharing you amazing, beautiful little angel with all of us and sharing her story. Her last picture of her smiling brought tears of to my eyes. It was like her way of saying goodbye and thank you for being amazing, wonderful, loving parents. My thoughts and prayers are with you and all of her friends and family during this very difficult time. You have an EXTREMELY special angel and she is dancing and smiling while she is watching over you.

Avery, I only became aware of your blog over the weekend (a friend of mine had but a link on facebook), and I am so glad that I was able to read all your incredible stories. What a spectacular life you lived!

I, like so many others, had never heard of SMA, and you have helped to educate millions of people...pretty impressive for someone so small :)

I'm praying for your Mummy and Daddy, and all your friends and family, as they grieve losing you, but also, as they celebrate your incredible life.

Avery, thank you for spending time with us and letting me into your life. I'm in shock of your passing but I know that while you were on God's green earth, you lived life to the fullest possible. You have changed the way I view life, milestones, and little moments. May you rest in peace and say Hi to all your famil yin heaven.

I'm sorry for your loss. While this is a difficult time for you and your family I'm glad that you guys made the most of the time you had together. I loved following her bucket list and am happy that you guys lived life to the fullest before she passed. Now you have an adorable little angel waiting on the other side for you guys. You are in my prayers.

I'm so sorry.... I cried today I can't imagine.... She's beautiful your family is beautiful.. I'm at a lose for words I just want you to know what amazing parents you are to her give her the joys of this world... And though it came to soon gods love and warmth holds her now she is safe happy and still loved by all of us.....

My best wishes and deepest condolences to you and your family. I couldn't imagine what you're going through, nor could I pretend like I know what to say to ease your pain. Know that you have touched my heart, and in doing so, have inspired me to be a better person. You're wonderful parents and I'll never forget Avery.

Michael and Laura,We are so deeply sorry for the loss of your beautiful Avery! She has made such a huge impact on people worldwide and absolutely never will be forgotten. Please know that we are all here for you at anytime.Most sincerely,Colleen McCarthy O'Toole and everyone at Families of SMA

Mike and Laura,I am so, so so very sorry to read this blog this morning. I can't imagine how much your sweet little girl will be missed. keeping your family in my thoughts and prayers. -Melodie (Taysen's mom)

I recently began reading Avery's amazing blog. What an inspiration she was. As well as you and your wife. I am in awe of your strength. I want to thank your for bringing SMA awareness to the world. I will be asking for this testing personally. Again, thank you. And I am so sorry for your loss. What an amazing spirit your sweet girl must have.

I've been reading your blog for a few days and am so sorry to hear that little Avery has passed. Praying for healing for your family, and will help spread the message about SMA. Thank you for creating this blog and taking time out of your life to share sweet Avery with the world. Love and peace to your family.

Baby Avery, you have touched so many lives. I sent a special gift over the weekend and I hope your Mommy and Daddy can put it to use in your honor. Many of us are going to be burning our Diamond Candles for you tonight.I also made a donation in your honor.Thank you so so much for educating so many on SMA and testing.Your name will continue on.......

I was not expecting this when I came on today to read any new posts. I am praying for you and your beautiful wife. I am so sorry about your loss but I am thankful you have brought awareness to SMA. If I ever get pregnant again I will for sure ask for this testing and then ask my doctor WHY he does not offer it. Avery is a beautiful angel smiling that gorgeous smile and running around heaven! We will never forget!

Rest in paradise you beautiful angel...my thoughts and prayers are with her parents and family and friends. You are loved and missed by so many Avery...bucket list: play with the angels, got your pretty little wings and smiling down on Mommy and Daddy who you know miss you so much...you touched the world Avery. My years for you are not going to be tears of sadness but of happiness that your pain is gone and all nothing will ever hurt you beautiful angel.

You and your family will be in my thoughts...I looked forward to reading of avery's life, and it made me realize what is more important in life. And that I have so much to see and do with my family before it is my time.

Avery, I just discovered your blog yesterday and fell in love with you. I know your parents are so proud of you even though they will miss you so very much. Sounds like all your family members in heaven needed you to come on up a little earlier than planned to help them out up there. To Avery's parents: I cannot begin to fathom your heartbreak. You were obviously the best parents Avery could have been blessed to have during her short time on earth. She had a better life in 5 months, and did more fun things, and touched more lives, than most people do in a full lifetime...all because of your love.

May your sweet angel, in her short time, have brought the much needed awareness to this cause. My deepest sympathies to your family. May you find comfort in her memory. God bless you both and sweet Avery.

I cannot believe I am reading this. I saw this on FB and saw the reference to "4/30/12" and thought...there's NO WAY...! And yet, there is. Dear, sweet Avery...in heaven, there are a gorgeous set of twin boys. Their names are Jacob and Zachary. I am their mommy, and I held them for two hours before they died due to being born very early. I know they are super cute and they know what's going on up there, because they've been there since 2008. I know they will show you the ropes. To Avery's parents: the pain you will feel and the "grieving forward" (for the things you will never experience) will be hard. Cling to each other, and honor the memory of your beautiful daughter. I know you will do that. God bless your family. "Sorry" is not an adequate word for the loss of the most precious gift imaginable. You are in my prayers. I'm so sorry. She may not have danced with Ellen, but she is dancing with the angels now.

R.I.P. Avery. Your story will always be near to my heart. I have told my children of your story and they loved you just as much as I did. You are in a better place. You are loved by many and will never be forgotten. <3 <3 <3

I'm so sorry.... I cried today I can't imagine.... She's beautiful your family is beautiful.. I'm at a lose for words I just want you to know what amazing parents you are to her give her the joys of this world... And though it came to soon gods love and warmth holds her now she is safe happy and still loved by all of us.....

I had only yesterday heard of Avery. I was heartbroken when I went to look at the blog again today and read the news. My thoughts and prayers go out to you and your family and I hope that the memories of that precious little smile will help you heal.

Thank you so much for sharing your story with us. I have been moved to tears several times reading this blog. You have inspired me beyond words. I'll be running a half marathon this weekend, my first in 3 years, and will be thinking of you and your family the whole way. RIP Avery, keep smiling down on us!

Sweet Avery - you have touched my life in ways i didn't even know were possible. i made a donation in your name to Sophia's Cure and will continue to spread the message you started. You have made your parents very proud:)

“For the saved, death ushers us into the presence of Christ. "To be absent from the body, and to be present with the Lord" (2 Corinthians 5:8; Philippians 1:23). “So real is the promise of the believer's resurrection, that the physical death of a Christian is called "sleep" (1 Corinthians 15:51; 1 Thessalonians 5:10). “We look forward to that time when "there shall be no more death" (Revelation 21:4). We are never truly “dead,” just dreaming an endless “sleep.”

I just read about your sweet little girl Avery just the other day. I am incredibly sorry for your loss, no parent should ever have to lose their child, ever. Prayers and hugs to your family. Your story will help bring awareness to other children of this disease! I will kiss my little boys extra today :)

Even though many of us never got to meet Avery & her family, in this short time you have been very inspirational to me. That sweet spirit left us too soon, but left us with a responsibility to carry on in her name. As long as we don't lose hope or our own smiles =) we can have Avery with us. Thank you for sharing so intimately with the world. I too, never knew about SMA until Avery told me! Love & heart-felt thanks~there are no words for the condolences my heart wants to share. Be blessed un the human love of family~

My heart is just broken, Michael. You, your wife and family and friends have done a marvelous job making every moment count for your beautiful girl. I will continue to share Avery's story in hopes there will be a cure someday. I wish that day was now...My heart will forever be with you and your family, and I will pray to Avery every night. Love you and God bless you... Melissa, Brian and Aria Hess.

I'm so sorry for your loss. I first heard of your story from Kate Smith and have followed ever since. I loved following Avery's advertures and am heart-broken that she was taken so quickly. Thoughts to your entire family during this very difficult time.

My little girls had just put some items in the mail for Avery yesterday. Lilly has been carrying around her blankie for 4 years now and was going to send it to her next week after she said goodbye to it. We still plan on doing something this summer in way of a fundraiser (something small, just a lemonade stand). Please stay strong and as a mother, the tears are simply flowing for the two of you right now and I know that doesn't help you right now but I don't know what to say I just wish I could comfort you somehow. So strange, I don't know any of you personally but I can't help but love you all so much. You gave SO MUCH to make those last moments so special and I guess all I can say is that in that last picture it's so wonderful to see that she was smiling. She never lost that ability and you can remember her like that. Bless.

My heart truly aches with this news and I know the tears I am shedding can't come close to the ones you must shed for your baby girl. Our family grew to love Avery through your blog and watching her videos and seeing her photos here and on Facebook. Through her we not only learned about SMA, but we learned that we "can live life dying or we can die living life." We will honor Avery by continuing to spread the word about SMA and by choosing to die living life. Your family and Avery have been, and even now continue to be, a true inspiration. God bless you all and baby Avery. You will all continue to remain in our prayers and we will carry her memory in our hearts forever. Much love, the Stadelmyer family ♥

This post brought tears to my eyes as I always looked forward to reading about Avery's latest adventure. I cannot begin to imagine what you are going through as parents, as I too have an 11 month old daughter named Avery, but I thank you for bringing SMA awareness to me and many others. Avery was a lucky little girl to have had parents that loved her so much and fought to help cure and prevent her illness. After reading this blog I will definitely asked to be tested for the SMA gene before trying to conceive again. Prayers to your family!

I'm so sorry to hear of your loss on this day. Thank you for allowing your daughter to inspire me, to inspire all of us, that even in the hard times this life on earth may bring, we should never lose our smile and the joy of living. Thank you for sharing your daughter's life with the world, and I pray it has a lasting impact on the research and the future of those with SMA. I pray that you and your family are comforted during this time and that peace and comfort are brought to you all. Your daughter is truly an inspiration, and lived her short life very, very well. It was a life well-lived, and it will be a life well-remembered.

Dearest Avery,I just started reading your blog 2 days ago & I am absolutely heartbroken that have passed away. You are truly an angel and I'm sure the impact you have & will continue to make in this world will be larger than you ever could have imagined. You, your mom & dad are the bravest people I have ever had the pleasure of knowing (even it is only in the blogsphere!) and I know you will continue to watch over them. Besides, there are plenty of other folks keeping their eyes on them, so I'm sure that'll keep them in line! Rest peacefully Babygirl, knowing that you were loved by & put smiles on the faces of hundreds of thousands of people who never even had the pleasure of meeting you personally.

I am so sorry for your loss of precious Avery. My two year old just saw her last beautiful picture of Avery smiling... she said over and over again, "mommy look at the baby smiling!" SMA never took your smile away Avery. My heart is breaking for your family right now, but I will continue to share Avery's story. Thank you for teaching me to live everyday to the fullest. You accomplished a lot in your short time on earth and now you can watch over your mommy & daddy from the heavens above... God Bless your family

RIp sweet Avery and thank you so much for sharing your story, I will continue to share it as well. My thoughts and prayers are with your family. I'm moved by how wrong you all have been for your little girl. I don't know Yall but I love Yall and I love Avery too. What an amazing Angel she is. I hope she is dancing and having a ball in heaven. She will be with you always. Rip sweet Angel, Avery. You had a short life but made such a huge impact. There's NO doubting the fact that you had and continue to have a purpose.

I woke as I do every morning to read what Miss Avery was up to, only to find this post. I sit her with tears flowing down my face for your sweet angel! What a blessing and life changing young lady she is. She has forever changed me and the way I look at life! And to the two of you, your amazing grace and strength as parents has inspired me to become a better parent. Prayers and thoughts are with you. God Bless you both

Dear Avery,Thank you for being such an inspiration to all the people whose lives and hearts you've touched like mine. I will never forget you and your loving family. Thank you for sharing your love and your life with us all. I wish you could have had more time on this earth to spread even more of that love around... this world needs more of that. I hope your parents find some comfort in the fact that so many people's lives have been touched by your short, but extraordinarily beautiful life.Soar with the angels, sweet baby girl. Forever an angel in my heart.

I am so very sorry for the loss of your beautiful little girl. Please know that there are many people praying for your family, and you should be so proud of squeezing so much life into such a short amount of time.

Avery, I just heard about you and yor fight only a few days ago; if I had known earlier, I would most definitely have been reading your blog :) You were such an inspiration and I know that you will continue to be one. RIP sweet Angel

"The Lord is close to the brokenhearted and saves those who are crushed in spirit." Psalm 34:18I have been following your story since you started your blog. Sweet Avery was a precious blessing to so many, even the ones she never met. You and your family are in my prayers.Jessica Stevens- League City, TX

I am so very sorry for the loss of this amazing little girl. I'm the mother of a baby that was born at 28 weeks, so hospital stays and scary days are something I share with your family. I've followed your story and hoped so much that you would have a happier ending. Your love of your daughter and commitment to finding ways to fight this condition are inspiring. I pray you find peace as you mourn your heartwrenching loss.

wow, seeing this new post on my blogroll was a complete shock, and my prayers are with you both as you miss your little girl. i have just been following you for the last 3 weeks or so, but i have been blown away by the way you (she!) wrote with such positivity in the face of her diagnosis. my sister is pregnant with her first baby, and i'm going to tell her to request for her baby to be tested for SMA!!

I'm so glad SMA didn't take Avery's smile away! You both are so strong. You are so blessed to have a wonderful family and friends who have been there to support you and love you, me included! Avery will always be in our hearts and our minds. The acheivements Avery made have been absolutely amazing!! Just a testiment to her amazing parents! I love you Canahuati's!!!!

Dear Avery, I am so sad for your mommy and daddy. But I am glad to hear that you kept your beautiful little smile. I hope that all of your new friends here will keep up their efforts to get your mommy and daddy on the Ellen show. Your friends ahould continue your brave battle to get out the word about SMA so the researchers get the money they need to find a cure. Sleep well, little angel. You will always be loved by your many fans.

My thoughts and prayers go out to your family! I just found out about sweet Avery yesterday and am profoundly saddened that God has taken this sweet angel from the world, to be home with him, so very soon. One can only guess that he must have wanted her special soul and smile to be that much closer to him. God Bless you all through this difficulet time.

I am so sorry for your loss. I can't imagine what you are going through, but I hope you find some solace knowing that she is not suffering and she can rest easy now. I just starting following your blog about a week ago, and in that short time I have fell in love with your family, and your precious baby girl. Your story has touched my heart. I wish I could leave work and go home and hug my babies right now. God Bless you all. Xoxoxo from Tara in New Jersey.

I am so sorry to hear about Avery's passing. Know that she has touched and changed so many lives and will continue to do so from Heaven. My thoughts and prayers are with y'all through this difficult time. I will continue bombarding the Ellen show with emails today about Avery and about SMA. Let's not stop trying. Let's continue Avery's bucket list. Thank you Avery for spreading awareness about SMA. You will forever be loved by so many. Sweet dreams baby Avery. Sweet dreams.

Dearest Avery, Throughout your illness, you never stopped smiling, never stopped spreading SMA awareness and you never stopped touching hearts all around the world. I am a different person having "known" you and your mommy and daddy through your blog. I will forever be changed and will do all that I can to spread SMA awareness in your name and in the name of all of the babies born with this terrible disease. You looked straight into SMA with grace, beauty and have inspired many people to carry your torch. May your mommy and daddy and all your relatives and friends be comforted in the fact that you accomplished so much in your 5.5 months on this earth and will continue to do so even though you're gone.

I am so sorry for your lost. I just found your blog last Thursday and had read every post. I had never heard of SMA before reading your blog but wanted to help as much as I could. My heart hurts for you at this time and you and your family are in my prayers during this time.

I'm so sorry to hear of Avery's passing. You are two of the strongest parents I "know" (and I know a LOT as I lost a child as well) and even though you have a long road ahead of you, you will have so much peace one day. As I've heard from a friend of a friend, and I especially believe it to be true for Avery, there was no reason for her death but her life had purpose. Again, I'm so sorry that you did not get longer with your sweet blessing. The next year will not be easy, but learning to live with the pain gets easier than it is today, I promise. Many hugs to you and your family!

My prayers and condolences go out to your family, I recently saw the blog on twitter and began reading it yesterday. It brought tears to my eyes and now that I am aware of SMA I plan to share this beautiful, sweet, and innocent baby's story. p.s. her smile is infectious.

Please know my thoughts and prayers are with you and your family. May God give you strength to find your way through. Although I only met Avery through your blog, I can tell she was a very special little girl who was very loved. She touched many people.

I am so sorry for your loss. Avery was a special baby, and God wanted her with him, but in her short time here she definitely made a difference in this world. She was definitely too beautiful for earth so now she gets to fly with the angels.I will keep your family in my prayers.God bless <3

My prayers and condolences go out to your family, I recently saw the blog on twitter and began reading it yesterday. It brought tears to my eyes and now that I am aware of SMA I plan to share this beautiful, sweet, and innocent baby's story. p.s. her smile is infectious.

I am so sorry for your loss. I barely started following this blog, and Avery seemed like such a wonderful and happy child. I have a 3 month old myself and can't imagine going through this. You are some of the strongest people I have seen. Thank you for this blog and raising awareness of SMA. I know I'll never forget Avery.